Keratoconus my story- by Rachel G

Let’s be clear. I was no poster child for taking care of my eyesight. After a year or two of living behind the prison-like bars of garishly oversized glasses, I begged and pleaded with my parents that I was old enough at 12 to handle the responsibility of contact lenses.

I nagged stubbornly until they took me to the nearest Wal-Mart vision center where I was given an eye test and fitted for a pair of lenses.

“Be sure to take them out every night before you go to bed,” the technician instructed me after I demonstrated for her that I had learned to insert and remove them from my eye. I took her words seriously until that same evening, when I took them out in the bathroom and somehow lost the right lens before it could make it to its case.

Furious that I had lost a $150 piece of plastic on the very first day, my father refused my tearful request to get a replacement. I sobbed, assuming my chance to look like a normal kid at school was over before it had begun.

Quite miraculously, an hour or so later my older sister spotted the lens shining up at her from the woolly fibers of our shag carpeting. Oh, the sweet relief I felt! Forget what the technician had said, sometimes it was all too easy to throw caution to the wind and sleep in them. Never again would I risk the loss of a contact. Admittedly, it is one of the dumbest things I’ve done in my younger years.

Even though I hated waking up feeling as though paper was stuck to my eyes, it didn’t always deter me from sleeping in them. It wasn’t until high school that I became better taking about them out at night, but my eyes still felt dry constantly and itched mercilessly. And I rubbed them plenty, trying to get rid of the sensation.

I would press my palms firmly against my closed lids and push so long and so hard that sometimes I would see stars. But at least the itch would go away for a bit. When I hit college, I didn’t have a lot of money and ended up going to a Pearl Vision for a cheap contact update. The lenses never quite fit right and I was forever jabbing my finger into my eye to pull the lenses down. It became such a problem over time that I found a low-income clinic and scheduled an appointment.

“Something’s just not right,” I told the optometrist, pulling my contact back down again for what seemed the millionth time.

“You’re probably just not blinking enough,” he said. “Do you have eye drops?”

I left frustrated and without a proper solution, and the itching persisted. My friends marveled at how comfortable I was putting my fingers on my eyeballs.

A year or so later a co-worker and I grabbed sushi for lunch and I experienced my first ocular migraine. At first I thought it was just a sun spot, but it didn’t go away. The spot became a ring that slowly grew bigger in my plane of vision. Though I could see through it, like one looks through the hole of a bracelet, the fact that it persisted so long worried me. Thanks to my company’s health benefits, I found a doctor in our network that was a block away from the office and marched myself in.

After excessive prodding and countless eye drops, an elderly gentleman pronounced over the rims of his glasses that I had aggressive Giant Papillary Conjunctivitis (GPC) on the underside of my eyelids, brought on by ill-fitting contacts. He seemed to be admonishing me, though he never came out and blamed me, and coldly prescribed powerful steroids for my eyes before requesting I come back in two weeks to check my progress.

“The best we’ll be able to do for your vision is 20/30,” he said before writing a new prescription for glasses and delivering an order to stay out of contacts for at least a year. It was a crushing blow. I splurged on a pair of fancy frames in a small act of rebellion against the universe.

At my next appointment the doctor determined that the extra-strength drops didn’t work and told me he’d be referring me to a second doctor.

“I’ve got to say,” he huffed, brow furrowed. “I’ve never seen a case like yours. I just don’t know how to deal with you.”

That my disease-riddled eyes had stumped a doctor who’d probably been in practice for more than three decades hit my gut like someone had punched it. I walked away feeling like a hopeless can kicked down the road for the next person.

Luckily, doctor number two took a more thorough look. The GPC was still there, unaffected by the previous medication, and so he prescribed a new kind of drop that was still being studied in clinical trials. If I stayed on them for more than a few months, I could risk going blind.

But the kicker was when he explained that he had found Keratoconus in my right eye. “What happens is that your cornea is basically thinning, and it means the eye may take a more conical shape. You may experience deterioration in your vision, and it’s possible if it gets really bad over time that we would have to perform a corneal transplant.”

Even though his bedside manner was much kinder, I promptly went back to work only to fall apart in my boss’s office. The words “corneal transplant” had jumped out at me with fangs. At that point I couldn’t perceive the procedure as helpful, but rather a last-case procedure that would assuredly go wrong and leave me blind.

The shell shock of learning you have a condition that might require a corneal transfer down the road is scary. No, it’s not cancer and it’s not liver failure, and there are myriad other diseases that are worse. But that day I was confronted with something that could jeopardize my eyesight even more. I sobered up quickly, realizing just how much I value it.

That night I went home and scoured the Internet for possible ways to reverse or slow the process, anything to keep the transplant option off the table. In some ways I wish I hadn’t… the images of cone-shaped corneas that Google brings up are intimidating, especially when you don’t have anyone to make sure you don’t jump to conclusions. I found a handful of accounts claiming people had reversed their disease, but they seemed sketchy to say the least. There were also a few people who claimed a strict gluten- and wheat-free diet could drastically help. I tried altering what I ate, but I didn’t even make it three full days before caving for sushi.

I also learned that many doctors believe excessive rubbing to be a catalyst for Keratoconus. I have no doubt that my rubbing from years ago had a heavy hand in my diagnosis.

I am lucky, though. Keratoconus doesn’t affect my daily life too severely. After a few years parked in examination chairs and countless repetitive conversations, we have determined that it is not progressing quickly. Though it now presents in my left eye as well, the naked eye is not able to detect the distinctive rounding that’s going on behind the scenes. It does mean that I spend much more of my life wearing glasses, which I have come to peace with, and that I am very diligent about not rubbing. It also means that I am conscientious about trekking, yet again, back to an ophthalmologist. Never again will I subject my eyes to a Pearl Vision or a doctor who doesn’t take my concerns seriously.

A few years into my diagnosis, I met a young man who’d had a corneal transplant done. He was the first person I’d met who knew first-hand what Keratoconus actually meant and, in addition, he’d come through the other side of a corneal transplant with perfect vision. I can’t explain how excited I felt when he explained the doctor was a mere two hours away and was recognized in particular for this procedure. For a long time the option had loomed at the back of my mind, a scary bridge I hoped I would never have to cross. But his testimony helped me become more comfortable with the idea that I would be just fine it came to that.

Last June I sat in a new ophthalmologist’s office, catching him up on the history with my eyes and slightly reeling over the news that it had now caught up to my other eye. But as he finished his exam, he started discussing how some Keratoconus patients were receiving doses of riboflavin into their eyes, followed by ultraviolet light (known as corneal collagen crosslinking). He outlined that it’s still undergoing U. S. Food and Drug Administration (FDA) trials, but that it has become more common outside of the country. When he told me that many of these patients are seeing nearly 20/20 after the procedure, my inner blind child squealed.

The option for LASIK surgery flew out the window the minute I was diagnosed with Keratoconus. And for some reason, anytime someone asked about my eye problems, they were quick to tell me I should get LASIK done.

“I’m not a candidate,” became my catch-phrase, as it quickly grew frustrating to explain the same thing over and over.

While most of my doctors talked of Keratoconus as something we would monitor and hope didn’t progress, this doctor very calmly discussed with me that most patients he’s seen have Keratoconus in both eyes. In addition to an updated prescription for glasses, he fitted me for contacts: the left eye fitted in a slightly harder lens while the right was allowed something softer. The more rigid lens would help gently nip the progression of Keratoconus, he explained.

Because of my experience with Giant Papillary Conjunctivitis and Keratoconus, I’ve sat in a slew of waiting rooms, passed endless hours waiting for doctors, and had more tests performed than I can even count. So many times have I walked back into work with makeup streaking down my face thanks to the deluge of drops that flooded my eyes. It’s intimidating, but my advice to anyone just learning they have Keratoconus is to ask a lot of questions of your doctor. Don’t let them frighten you into passive acceptance or scare you from an optimistic outlook. Remember, overall you will have options. If you don’t think your doctor is giving you the attention you need, or you’re not comfortable with them, seek a second opinion before throwing your hands up in defeat.

We’re lucky now to have this keratoconus community – something I wish had been around when I first got my diagnosis. I needed someone to tell me that Keratoconus wasn’t likely to alter my vision to the point of blindness (as I have in some hyperbolic panics feared). I needed someone who had been through this to take my hand and calmly listen before explaining that there will be a path we can take through this.

It might be scary right off the bat, but I promise it will get easier. You will get more comfortable and adjusted as you navigate life with Keratoconus.

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3 thoughts on “Keratoconus my story- by Rachel G”

What a fantastic blog Rachel very well written. Hope you are doing well. I had my first transplant a little over 4 months ago & already have greatly improved vision and this I hope will continue to do so over the coming months.

Great post! I know a KCer who wears scleral lenses and has the same lid disorder as you from the contacts. Btw, I’m in the US and had bilateral CXL in L.A. and you do not get 20/20 vision from the surgery. I’m so sick of these misinformed doctors! CXL, as you may know, is designed to simply halt the progression of KC, although many people get some improvement in UCVA/BSCVA, but usually 1-2 lines on the Snellen chart and it occurs in roughly 2/3 of eyes. Just scour through the medical journals. CXL is the recommended protocol for progressing KC that is not in the advanced stage. I was one of the rare-types who got 6 lines back in my bad eye, but it still has keratoconcic vision. I also have a rare-type of KC due to connective tissue disease that caused it to develop in my late-30s (about 1.5 yrs ago) and progress very rapidly. I was in the moderate stage within 9 mos and out of options (I was also not diagnosed and then misdiagnosed–sort of your story). CXL is best in the milder stages and in younger patients, which you must be in if you can still see with glasses. Have you tried to get into a trial here? CXL should be approved within the next few years from what I hear, but you will need good medical insurance to cover it (minus co-pays). Feel free to visit my blog if you have any questions as I have lots of posts on CXL, etc.–there’s a link on my gravatar (the eye!) and you can find CXL in my categories and a link for the clinical trials in my 1st post. I tried to comment on your blog but got redirected here. 🙂